False negative on PET Scan???

camul
camul Member Posts: 2,537
in Breast Cancer #1
Had a PET Scan 2 weeks ago and it didn't show many tumors left and only a few hotspots. But when I went to MO and he said it was good news, I wanted to know why my lower back, tailbones and legs were so painful. He ref me to RO. Saw her last week and she ordered an MRI on my spine and lower back. Had a follow up today, it shows that my whole spine is riddled with tumors and holes and my tailbone and bum bones are also covered with tumors. These are the only areas that the MRI covered.

So, I am starting rads again on Tuesday, 11 on my tailbone area. Then I will have a full body bone scan on May 16th, and my MO, and RO, will meet with the tumor board on the 18th, then I see my MO on the 18th.

She said at that point we will all sit down and make some decisions on where to go from here. Looks like 12 rounds of chemo have been ineffective. These are the options so far:

One option is full body radiation, where they administer the radioactive meds intraveniously, possible side effect is that my white cell count drops and does not come back up. Other risk is 4-6 weeks without any chemo and the cancer could grow really fast.

Is anyone familiar with this?

The other option would be different, stronger chemo. Risks include damage to heart and other organs or that my body can't tolerate it at all.

This whole cancer thing sucks and the tears keep on coming. I love roller coaster rides but this one has been the ride from hell. I am so glad that I went to the RO, what if I would have accepted the results of the PET Scan thinking that the chemo was working, or if my MO would have blown off my complaints of pain (I can no longer tie my shoes, put on socks, or bend down and get back up)!

Now the good news is that I am here to watch both boys graduate from college tomorrow and I actually found something really nice to wear (I am so puffed up like the marshmallow woman)!

Thanks for listening, this has been another big blow.
Prayers to all,
~Carol
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Comments

  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #2
    Hugs & Prayers
    Carol... I am so sorry to hear you are having to wage battle with cancer again. It is a devastating and cruel disease. I pray your doctors come up with plan of attack that will rid those cancer cells from your body. Your Sister's in Pink are here for you and we will be there holding your hand in spirit and lifting you up in prayer.

    I am happy to hear you will get to see your two boys graduate from college. What a thrill it must be for you to know your sons' have accomplished one of many milestones in their young lives. Congratulations Mama! It could not have happened on a better weekend! Happy Madonna( Mother's) Day to YOU, Carol!!!

    Take care, God bless.
    Ines
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    I am so, so sorry that you
    I am so, so sorry that you are going through this. Please know that I will be with you in Rads on Tuesday--I'll bring cafe au lait and beignets. It was good that your MO listened, but it was equally important that you asked why all the pain if the PET was negative. I continue to maintain that we often know when things aren't right with our bodies and it is so important that we communicate that with a trusted physician. You are an inspiration. My thoughts and prayers are with you.
  • missrenee
    missrenee Member Posts: 2,136 Member
    #4
    CypressCynthia said:

    I am so, so sorry that you
    I am so, so sorry that you are going through this. Please know that I will be with you in Rads on Tuesday--I'll bring cafe au lait and beignets. It was good that your MO listened, but it was equally important that you asked why all the pain if the PET was negative. I continue to maintain that we often know when things aren't right with our bodies and it is so important that we communicate that with a trusted physician. You are an inspiration. My thoughts and prayers are with you.

    Oh, Carol, I know this is not the news you wanted to hear
    I'm so sorry you're having to go through this. Like Cynthia said, --your intuition was spot-on. You knew that something just wasn't right and you took action. Hopefully, you'll be able to use the least bothersome option, get those spots cleared up and move on.

    You're in my prayers, and I send you positive energy and warm hugs.

    Renee
  • cahjah75
    cahjah75 Member Posts: 2,631
    #5
    Carol
    I'm so sorry to hear about your ordeal with the PET scan and MRI. I had a PET scan of only my chest area. I had an MRI (my rheumatologist ordered) of my lumbar area and I have seen a neurosurgeon. I have degenerative disc disease. Hopefully if there were any tumors the neurosurgeon or the radiologist who read the MRI would have said something. I'm glad that you are able to see your boys graduate. Sending positive thoughts your way as you continue this journey.
    {{hugs}} Char
  • camul
    camul Member Posts: 2,537
    #6
    I thank each of you for the
    I thank each of you for the support, I knew this wouldn't be an easy ride, but some days are just really hard! It is so good to have so many who understand the ups and downs.

    Love you all.
    Carol
  • MAJW
    MAJW Member Posts: 2,510 Member
    #7
    camul said:

    I thank each of you for the
    I thank each of you for the support, I knew this wouldn't be an easy ride, but some days are just really hard! It is so good to have so many who understand the ups and downs.

    Love you all.
    Carol

    That's..
    What we do...try to lift one another up
    .Carol, wishing you better days...as I say, we aren't together physically, but we're all in this together.....please keep us posted...
    Hugs,
    Nncy
  • aysemari
    aysemari Member Posts: 1,596 Member
    #8
    Carol I am giving you HUGE hug
    You have inspired me so with your posts and your accomplishments
    in those 8 years. The courage and strength you have displayed are
    beyond belief.

    This post made me tear up too. It is full of your love for life, anguish
    of loosing what is so precious for you and hope that you will overcome.

    There's nothing more I could add but a warm hug!

    Love,
    Ayse
  • aysemari
    aysemari Member Posts: 1,596 Member
    #9
    Carol I am giving you HUGE hug
    You have inspired me so with your posts and your accomplishments
    in those 8 years. The courage and strength you have displayed are
    beyond belief.

    This post made me tear up too. It is full of your love for life, anguish
    of loosing what is so precious for you and hope that you will overcome.

    There's nothing more I could add but a warm hug!

    Love,
    Ayse
  • aysemari
    aysemari Member Posts: 1,596 Member
    #10
    Carol I am giving you HUGE hug
    You have inspired me so with your posts and your accomplishments
    in those 8 years. The courage and strength you have displayed are
    beyond belief.

    This post made me tear up too. It is full of your love for life, anguish
    of loosing what is so precious for you and hope that you will overcome.

    There's nothing more I could add but a warm hug!

    Love,
    Ayse
  • aysemari
    aysemari Member Posts: 1,596 Member
    #11
    Carol I am giving you HUGE hug
    You have inspired me so with your posts and your accomplishments
    in those 8 years. The courage and strength you have displayed are
    beyond belief.

    This post made me tear up too. It is full of your love for life, anguish
    of loosing what is so precious for you and hope that you will overcome.

    There's nothing more I could add but a warm hug!

    Love,
    Ayse
  • camul
    camul Member Posts: 2,537
    #12
    aysemari said:

    Carol I am giving you HUGE hug
    You have inspired me so with your posts and your accomplishments
    in those 8 years. The courage and strength you have displayed are
    beyond belief.

    This post made me tear up too. It is full of your love for life, anguish
    of loosing what is so precious for you and hope that you will overcome.

    There's nothing more I could add but a warm hug!

    Love,
    Ayse

    Thanks Ayse for your support
    Thanks Ayse for your support and warm hug! I think this one calls for a Margarita! Thank God that the sun was shining today or it would have been even worse!

    Will keep you posted,
    Carol
  • butterflylvr
    butterflylvr Member Posts: 944
    #13
    aysemari said:

    Carol I am giving you HUGE hug
    You have inspired me so with your posts and your accomplishments
    in those 8 years. The courage and strength you have displayed are
    beyond belief.

    This post made me tear up too. It is full of your love for life, anguish
    of loosing what is so precious for you and hope that you will overcome.

    There's nothing more I could add but a warm hug!

    Love,
    Ayse

    Wow Carol you have gone
    Wow Carol you have gone through more then any woman should endure. Your uplifted spirit touches my heart deeply, some days I don't know how you do it. You are one tough woman and a great warrior. My heart goes out to you... stay strong and beautiful..

    Hugs,
    Lorrie
  • linpsu
    linpsu Member Posts: 747
    #14
    Carol
    I am so very sorry to hear your disheartening news. Thank goodness you took it upon yourself to get to another doctor when you felt the PET scan results did not tell the whole story. Here's hoping that your doctors figure out the correct plan of action to relieve your painful symptoms. Hugs and prayers are being sent your way. Love, Linda
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #15
    camul said:

    Thanks Ayse for your support
    Thanks Ayse for your support and warm hug! I think this one calls for a Margarita! Thank God that the sun was shining today or it would have been even worse!

    Will keep you posted,
    Carol

    I'm wrapping my arms around
    I'm wrapping my arms around you Carol and hoping to offer you some comfort. Like all of the other pinks sisters here, I teared up, but, I know with your fighting spirit that you will get thru this.

    Lean on us when you need to, as, that is why we are all here. To help you, encourage you, support you and to listen to you.

    I am also saying prayers for you Carol! Keep posting to update us.


    Sue :(
  • Marsha Mulvey
    Marsha Mulvey Member Posts: 597 Member
    #16
    linpsu said:

    Carol
    I am so very sorry to hear your disheartening news. Thank goodness you took it upon yourself to get to another doctor when you felt the PET scan results did not tell the whole story. Here's hoping that your doctors figure out the correct plan of action to relieve your painful symptoms. Hugs and prayers are being sent your way. Love, Linda

    very sorry
    Carol, I'm very sorry to hear your news but glad that you were your own best advocate. I don't know anything about full body radiation, but want to wish you the best whichever path you take. You'll be in my thoughts and prayers.
    Marsha
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #17
    Bummer
    You of course are on the prayer list.
  • Hippiechick58
    Hippiechick58 Member Posts: 320
    #18
    laughs_a_lot said:

    Bummer
    You of course are on the prayer list.

    You will be in my thoughts
    You will be in my thoughts and prayers. So glad that you get to see your sons graduate!

    "May you be at Peace, May you be Free of Suffering,"
    Dianne
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #19
    linpsu said:

    Carol
    I am so very sorry to hear your disheartening news. Thank goodness you took it upon yourself to get to another doctor when you felt the PET scan results did not tell the whole story. Here's hoping that your doctors figure out the correct plan of action to relieve your painful symptoms. Hugs and prayers are being sent your way. Love, Linda

    You are in my thoughts and
    You are in my thoughts and prayers Carol.


    Hugs, Diane
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #20
    Hippiechick58 said:

    You will be in my thoughts
    You will be in my thoughts and prayers. So glad that you get to see your sons graduate!

    "May you be at Peace, May you be Free of Suffering,"
    Dianne

    Carol ..
    My thoughts and prayers are with you. I am happy that you advocated for results regarding your bone pain, unhappy about the results. May your doctors and specialist target those pesky tumors, and rid your body of any cyst/tumors - Forever.


    Strength, Courage and Hope coming your way.

    Gentle hugs,

    Vicki Sam
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #21
    cahjah75 said:

    Carol
    I'm so sorry to hear about your ordeal with the PET scan and MRI. I had a PET scan of only my chest area. I had an MRI (my rheumatologist ordered) of my lumbar area and I have seen a neurosurgeon. I have degenerative disc disease. Hopefully if there were any tumors the neurosurgeon or the radiologist who read the MRI would have said something. I'm glad that you are able to see your boys graduate. Sending positive thoughts your way as you continue this journey.
    {{hugs}} Char

    Prayers and hugs to you
    Prayers and hugs to you Carol!


    Hugs, Jan

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